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- neonatal intensive care unit
- end of life decisions
- gestational age
- family centered care
- prematurity
- communication
- neonatal outcomes
- clinical ethics
- bioethics.
Decision-making for extremely preterm infants is ethically complex and wide variations of practice exist within and between countries. The investigators of the EPIPAGE (epidemiological study on small gestational ages) 2 study have studied outcomes for all births between 22 and 26 weeks of gestation in France during 2011. In their current study, they explored the variation in proactive antenatal care across the country.1 They demonstrate huge variation in the proportion of preterm infants who received active antepartum interventions, ranging from 22% to 61%. Alongside these data, they show immense variation in the proportion of babies at different gestational weeks born alive but who subsequently died in the delivery room—45% of live births at 24 weeks died before admission, and 90% at 23 weeks. In total, only 28% of liveborn babies survived at 24 weeks and there were no survivors below this.
In EPICure 2 (population based study of survival and outcomes in extremely premature infants), a similar study that took place in England, there were differences in mortality between non-neonatal intensive care unit (non-NICU) and NICU centres across the board.2 Similar large variations in mortality occurred in 2006 in the same gestational range as EPIPAGE 2; although overall non-active neonatal care only explained 32% of the variance between populations, at 23 weeks it was as high as 76%. In a recent National Institute of Child Health study, interventions in the delivery room explained 78% of the variance in mortality between the constituent hospitals.3
These variations reflect a prevailing pessimistic philosophy regarding extreme prematurity. National policies often use death and adverse outcomes to justify non-intervention in …
Footnotes
Contributors All authors have drafted the ideas to be in this editorial together. AJ made a plan for the editorial. AJ wrote the first draft of the editorial. NM optimised the first draft.
Competing interests NM is Chair of the NHS England Neonatal Critical Care Clinical Reference Group.
Provenance and peer review Commissioned; internally peer reviewed.
Author note Parent representatives: JB is the father of Maren and Lily who were born at 25 weeks of gestational age, Lily died in the first week of life, Marenis is now 7 years old. MH is the father of Domenica who was born at 22 weeks of gestational age. She is now 5 years old. SN is the mother of Marcus, who was born at 23 weeks of gestational age, was not offered intervention and intensive care admission. He died during birth. For a more complete description of the families please see reference 6.